Hangin with the LPA (Little People of America...now you're up to speed)

Almost right after we found out about Sam's diagnosis, we joined LPA and it has been a huge help to us.  It actually all started when our friends Jake and Becca Whitehead introduced us to their neighbors the Crumleys (who are both little people).  We had a fun dinner, talked about LPA, and asked them a bajillion questions about life as a little person.  Now that Sam is older, it's been really fun to go to the activities and have him interact with other kids with dwarfism and be able to chat with other parents and adults with dwarfism about anything and everything.  We instantly got accepted into this new community...it's really truly amazing.

Back in October, Sam and I went to the Halloween party (Kael had to work...boo) and Sam won his first costume contest (everyone kid won a ribbon but whatever who's keeping track).

All the kiddos together!  Can you find the bag o' loot aka Sammy?  I had to post this one cuz of the cute little crying dinosaur in the front.

New friends!  Loretta (the one in the middle) sent Sam this cute monkey (see below) when he was in the hospital for surgery.  Super thoughtful :)

In April, we went to our first regional conference in Riverside and got to meet so many more new friends.  They held parents' workshops, kids/craft room, career panel, and the best part, dinner and dance.

Sammy shared his first dance with Sandy

The glow stick might be Sammy's new favorite toy

Sammy's too busy rocking out to take a picture

We also went to the LPA Easter Party (Kael had work again...boo) and Sammy was scarred for life by the giant white blob with cold black eyes.  

Here's to many more years of LPA memories.

Much love,

Heather

Getting Surgery Like a Champ

After many delays and issues with scheduling, SamBam finally got his spinal decompression surgery on January 22nd!  We woke up at 5am and got to Cedars for the pre-op check-in process.  Being nervous wrecks the night before and not getting the best sleep may have help us a little because Kael and I just felt like complete zombies during the whole thing.  The surgical team just did the most amazing job keeping us informed and giving us updates throughout the surgery.  My mom and stepdad Barry came for support and kept us company during the long wait.  Thanks to my mom for agreeing to speedwalk with me around the hospital hallways to keep my mind occupied and to increase my step count on my Fitbit :)  When Sammy finally came out and I got to see him for the split second before he got taken to the PICU, it felt like I was coming up for air after holding my breath under water for the last four hours.  He did remarkably well and there were no complications at all.  Here's the little guy when he first started waking up from the anesthesia:

"What is this thing on my finger?"  

Loving all the cute stuffed animals that got sent to us from friends

We had the pleasure of having Shiney (an old undergrad friend of mine from UCI...now an awesome budding pediatric neurologist) as our resident while we were there.  The nurses were amazing and fought over who gets to be Sammy's girlfriend...haha.  He did flirt with every single one of them so I can't blame them.  Kael and I made the mistake of not bring our change of clothes or pajamas...I think we were too focused on getting Sam ready.  So I pretty much lived in a blood-soaked shirt (from Sam's bandage on his head) for a few days.  When my mom came, I quickly ran across the street to Beverly Center to get a new shirt.  People probably thought I was a crazy murderer running away from the crime scene.  Not my most glamorous moment for sure.

All in all, his recovery was a breeze and he was back to himself in about a week.  He'll need a repeat MRI in 3 months and a repeat sleep study in 6 months.  Already, he seems to be getting more well-rested sleep and is more actively crawling and climbing everywhere.  Not sure if it was all from the surgery but we're just happy he's doing so great.  Here he is holding himself up to stand!!!

Already 3 Months

Our SamBam is officially 3 months.  How did we get so lucky to have such a happy baby?    

Here's a little video of his first three months...just iphone videos compiled together.  I had plenty more footage but I had to set a 3-minute limit for myself.  I think it's all cute but a 60-minute video might be overboard.

Here are some of his favorites right now:

Favorite word: "ergwah" "goo" or a combination of the two.

Favorite toy/cuddle buddy: Marley our cat.  Sam's little head of hair is too tempting for Marley...he is constantly trying to cuddle with Sam and groom his hair (see pic below).     

Favorite song: ABCs

Favorite teether: His fingers...the more he can fit in his mouth the better.
Favorite blankies: Aden + Anais Swaddle Blankets Yes literally everyone and their mom has (have? ) these...but for good reason
Favorite pass time: Hanging out in his activity gym. It's great for his back and he loves trying to grab the owl. 

First Appointment

We took Sam to his first appointment with a skeletal dysplasia specialist at Cedar-Sinai.  They measured him and charted him on a special growth chart for kids with achondroplasia.  He's at about the 65th percentile for both head circumference, weight and height.  The head circumference is something we have to monitor regularly because there's a higher chance to have fluid buildup in the brain (hydrocephalus).  The opening at the bottom of the skull where the spinal cord goes down (foramen magnum) is a lot more narrow in people with achondroplasia so we have to make sure there's no warning signs that his brainstem is being pinched.  She checked his fontanelles, muscle tone, breathing, reflexes, and veins on the forehead and didn't see anything abnormal so she's happy that Sam is doing so well.  She says we may want to get a CT or MRI to assess his brain but CT exposes him to radiation and MRI requires sedation which can be risky so for now we'll just watch him closely.  We asked her about this bump in his back and she said it was a gibbus and fairly common in achon babies.  Once they develop better muscle tone and trunk strength, it should resolve on its own.  She also noticed Sam has torticollis which means his head tends to turn right more than left.  Babies can get this because they're lying on their backs all the time and don't get enough head movement.  She told us to stretch and turn his head side to side everyday and it should go away.  That was pretty much it for his first appointment.  We'll go back when he's four months just to make sure everything is going ok.

He also just got his 2 month vaccines a couple of days ago...poor baby :(  When we got home after his shots, he was in the best mood for some reason so I of course had to take pictures.  I love this little guy.    

I'm two months old!

The Beginning.

Did we seriously just survive?  I can't believe four weeks have already passed by since we welcomed Sam into our lives.  It's been incredible and surreal as well as exhausting and overwhelming.  A few weeks before the c-section I decided I was going to start blogging about Sam and other aspects of our lives.  For family, for friends, for ourselves to document and remember.  The idea of blogging has always been daunting for me because I knew I would put too much pressure on myself to make it perfect.  So...I am now telling myself to ditch this idea out the window and just write and post whatever I want.  Who cares if it's not the most well-written or beautifully photographed.  It'll be what Kael and I make of it.  Here goes...

When Kael and I found out I was pregnant we were overjoyed.  After almost two years and a few rounds of infertility treatment, it was actually happening.  I started a week by week pregnancy photo journal and went religiously to my prenatal visits.  At 34 weeks, I was in the doctors office for a routine ultrasound and the doctor mentioned Sam's femur lengths were shorter than expected.  After doing a full-scale ultrasound with the ultrasound specialist and maternal fetal specialist, they confirmed that Sam has a type of dwarfism or skeletal dysplasia.  I was seriously speechless and overwhelmed.  We had to wait over the weekend until we could meet with a skeletal specialist to tell us what form Sam had.  Google of course freaked us out with all the possible lethal forms of skeletal dysplasia but we tried to be optimistic that our Sam was healthy and could live a productive and long life.  On Monday, we met with Dr. Krakow at Cedars-Sinai who told us the news that Sam has achondroplasia.  It was a relief because that meant that he wouldn't have a shortened life expectancy and would be developmentally on track in every way except for his height.  He would take slightly longer to crawl, sit up and walk.  I would have to get a c-section due to his larger head size and the risk of brain hemorrhage and cervical spine issues during a normal vaginal delivery.  So we started researching and reaching out to parent groups and LPA (little people of America) to get all the info we could about Sam's condition.  What we found was encouraging.  We knew there would be challenges but what parent doesn't have challenges...right?  We just kept on preparing for the big day and praying that Sam would be healthy.

On March 8th, our 7-pound and 10-ounce baby arrived at 9:08am and graced us with a gorgeous head of hair.  He was totally healthy and came straight to the recovery room with me after the c-section.  The 3-day hospital stay went relatively smoothly despite getting little sleep but having that automated, remote-control hospital bed was AWESOME.  At home, it took me (and Kael) twenty times the effort just to get me in and out of bed.  So glad I'm now recovered enough to get out of bed myself.


Some things we've learned about Sam in the first four weeks:
-He loves sleeping with one arm (or both arms) up by his head.
-He's constantly doing the "one-eyed stink face" especially when he's focusing on eating.
-He is one gassy baby...Kael's pretty proud and says our son is a real man.
-He's super strong!  When he got his circumcision, he kicked his legs out of the holders and the doctor was shocked how strong he was. 
-His arms are CARRRAZZY.  Maybe this is the case with all babies but Sam loves waving them around and shakes his fist when he gets irritated...it's so hilarious.
-His hair is uncontrollable.  like father like son.